Society for Participatory Medicine
e-patients.net blog
hc’s problem list
hc's problem list, positive patterns, reforming hc
What if health care…?
For over a year I’ve been the accidental manager of a community garden. All I did — I swear — is point out an open plot of land and people started pitching in, planting, asking friends to join them. All of a sudden we’d transformed a bare patch into something beautiful. I thought for sure [...]
Read Morefound on the net, hc's problem list, policy issues
What if we treated substandard *info* like substandard drugs? (Riff on an IOM report)
Major typo fix, 3:23pm – “they’re giving” is not same as “they’re given”! Sorry. This note arrived today from the Institute of Medicine. I’m in DC at the moment, at a big briefing by the Health Affairs policy journal about patient engagement, and a key issue keeps coming up: the problems that happen when patients [...]
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Cristin Lind: My new litmus test for patient-centeredness
Guest blogger Cristin Lind is an e-caregiver and e-patient; her personal blog is called Durga’s Toolbox. When trying to find a definition for what real patient- or family-centered care looks like, I can easily to get caught up in inspirational jargon. But a recent visit for my biannual mammogram (fun!) helped me give a very [...]
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NEJM: Post-Hospital Syndrome
SPM member Marge Benham-Hutchins (see her December post) spotted this item. It’s a vital point for patient and family awareness, leading to patient engagement – patients as responsible drivers of their health. I added the italics below. From a recent Perspectives essay in the New England Journal: “To promote successful recovery after a hospitalization, health [...]
Read Moree-patient stories, e-pts resources, hc's problem list, key people, policy issues
Top 5 Posts of 2012
I was curious to see which were the top 5 posts, traffic-wise, and figured readers might be interested, too. Here’s the line-up: #1: Open knowledge saves lives. Oppose H.R. 3699! by Gilles Frydman The e-patients.net post with the highest number of views is a clear call to action in favor of open access to research. [...]
Read Moregeneral, hc's problem list, medical records, reforming hc
Danny van Leeuwen: The Right Information in My Health Record
Danny van Leeuwen, Opa MPH RN CPHQ is a patient (Multiple Sclerosis), a caregiver, a nurse, and a leader. A version of this piece originally appeared on his blog, Health Hats. What do we e-Patients need in our electronic health records? Help by sharing in the comments: 1) The scenarios where medical record content was [...]
Read Moree-pts resources, general, hc's problem list, reforming hc, shared decision making
Marya Zilberberg: ACOG’s dysmenorrhea FAQs: Evidence of propaganda?
Guest blogger Marya Zilberberg is the author of Between the Lines: Finding the Truth in Medical Literature. She originally posted this piece on her blog Healthcare, etc. I have been looking up information on endometriosis for a friend of mine, and came upon this from the American College of Obstetricians and Gynecologists: So I bit [...]
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What’s in a (disease) name?
I witnessed an intriguing Twitter conversation between Christy Collins and Greg Biggers about disease names, so I asked Christy to write up her thoughts. It is an honor to host this guest post: By Christy Collins When I started an advocacy and research organization for my daughter’s rare genetic syndrome, I thought I would spend [...]
Read Moree-patient stories, e-pts resources, found on the net, general, hc's problem list, Why I joined, Why PM
New SPM Members Bring Magic Levers and Untanglers for Healthcare
This listserv exchange between new Society for Participatory Medicine members is a nice example of how “newbie” e-patients often come to us with decades of experience and well-honed (and well-blogged) philosophies of what healthcare should be and can be. From: Danny van Leeuwen Subject: Re: Greetings from a new member As a newbie to [...]
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SUITS and VOMIT: fun at the ABIM Foundation Forum
As noted a few days ago, I’ve been at the ABIM Foundation Forum. This is, frankly, the most heartening event I’ve been to: the Foundation people are working hard to generate real transformation in the practice of medicine, including the new Choosing Wisely campaign with Consumer Reports, how ABIM certifies doctors in various specialties, etc. [...]
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